Introducing the Stress and Distress Symptom Scale – An outcome measure for distressed behaviour in dementia care

Assessing the psychological and behavioural symptoms of dementia can be challenging and the language used to describe these symptoms can vary significantly between health and care settings. This inconsistency is concerning, as care provider perceptions are known to influence the interventions delivered, and is likely to be highly impactful for a population who will commonly transition between a number of settings as the disease progresses and needs change. Following a national call for embedding a routine baseline measure within specialist dementia units (Excellence in Care, NHS Scotland, 2022), the Challenging Behaviour Scale (Moniz-Cook et al., 2001) was reviewed. Feedback from staff highlighted difficulties in using the tool due to outmoded terminology and not reflective of current care values. This paper outlines the process of updating the tool, now called the ‘Stress and Distress Symptom Scale’ (SDSS), and presents an example of its utility in evaluating the impact of training within a care home setting. Using consistent, person-centred assessment tools like the SDSS over time and across care settings is suggested to facilitate smoother transitions and improve care outcomes. Future research is recommended to further evaluate the SDSS’s validity and reliability in comparison to existing measures, with the aim of reaching consensus of use between services and settings.